Advanced Cancer in Young Adults (YAs): Living in a Liminal Space.

Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22-39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance.

The impact of survivorship care plans on adolescent and young adult head and neck cancer survivors and their primary care providers.

PURPOSE: A cross sectional study of adolescent and young adult (AYA) head and neck (H&N) cancer survivors was performed to assess late effects. Survivorship care plans (SCPs) were generated and evaluated by participants and their primary care providers (PCPs). METHODS: AYA H&N survivors who had been discharged over 5 years prior from our institution were assessed in recall consultation by a radiation oncologist. Late effects were assessed and individualized SCPS were created for each participant. Participants completed a survey evaluating the SCP. PCPs were surveyed before the consultation and after evaluating the SCP. RESULTS: 31/36 participants (86%) completed the SCP evaluation. The SCP was considered to be a positive experience for 93% of participants. Most of the AYA participants indicated that the information provided in the SCP helped them understand the need for follow-up to assess late effects (90%). The pre-consultation PCP survey response rate was 13/27 (48%) and only 34% were comfortable in providing survivorship care for AYA H&N cancer patients. The PCP response rate to the survey that accompanied the SCP was 15/27 (55%) and the majority (93%) reported that the SCP would be helpful to care for other AYA and non-AYA cancer survivors in their practice. CONCLUSIONS: Our research suggested that AYA head and neck cancer survivors valued the SCPs as did their PCPs. IMPLICATIONS FOR CANCER SURVIVORS: The introduction of SCPs is likely to help improve survivorship and transitioning of care from the oncology clinic to PCP in this population.

Outcomes of a radiation sparing approach in medulloblastoma by subgroup in young children: an institutional review.

OBJECTIVE: To describe disease outcomes including overall survival and relapse patterns by subgroup in young pediatric patients treated for medulloblastoma with a radiation-sparing approach. METHODS: Retrospective analysis of clinical outcomes includes treatment, relapse, and salvage therapy and late effects in children treated for medulloblastoma with a radiation-sparing approach at British Columbia Children's Hospital (BCCH) between 2000 and 2020. RESULTS: There were 30 patients (median age 2.8 years, 60% male) treated for medulloblastoma with a radiation-sparing approach at BCCH. Subgroups included Sonic Hedgehog (SHH) (n = 14), group 3 (n = 7), group 4 (n = 6), and indeterminate status (n = 3). Three- and 5-year event-free survival (EFS) were 49.0% (30.2-65.4%) and 42.0% (24.2-58.9%) and overall survival (OS) 66.0% (95% CI 46.0-80.1%) and 62.5% (95% CI 42.5 and 77.2%), respectively, with a median follow-up of 9.5 years. Relapse occurred in 12/25 patients following a complete response, of whom six (group 4: n = 4; group 3: n = 1; unknown: n = 1) were successfully salvaged with craniospinal axis (CSA) RT and remain alive at a median follow-up of 7 years. Disease/treatment-related morbidity included endocrinopathies (n = 8), hearing loss n = 16), and neurocognitive abnormalities (n = 9). CONCLUSIONS: This radiation sparing treatment approach for young patients with medulloblastoma resulted in a durable cure in most patients with SHH subgroup medulloblastoma. In those patients with groups 3 and 4 medulloblastoma, relapse rates were high; however, most group 4 patients were salvaged with RT.

Palliative radiation therapy for children with cancer.

Radiation therapy (RT) is often used as a palliative treatment for children with recurrent malignant disease to ameliorate or prevent symptoms. However, no guidelines exist regarding the clinical indications or dose fractionation for palliative RT. The goal of this report is to provide guidelines for the use of palliative RT in children with cancer. In this guideline, appropriate indications for palliative RT, recommended dose-fractionation schedules, relevant toxicities, and avenues for future research are explored. RT is an effective palliative treatment for bone, brain, liver, lung, abdominopelvic and head-and-neck metastases, spinal cord compression, superior vena cava syndrome, and bleeding. Single-fraction regimens (8 Gy in one fraction) for children with short life expectancy are recommended for simple, uncomplicated bone metastases and can be considered for some patients with lung or liver metastases. A short, hypofractionated regimen (20 Gy in five fractions) may be used for other indications to minimize overall burden of therapy. There are little data supporting use of more prolonged fractionation regimens, though they may be considered for patients with very good performance status. Future research should focus on response and outcomes data collection, and to rigorously evaluate the role of stereotactic body RT in well-designed, prospective studies.

Long term toxicity of intracranial germ cell tumor treatment in adolescents and young adults.

PURPOSE: The purpose of this study is to describe the long-term toxicities of intracranial germ cell tumor (IGCT) in the adolescent and young adult (AYA) population. METHODS: We report late toxicities of a multi-center cohort of AYA patients treated for IGCT between 1975 and 2015. Charts were retrospectively reviewed for hormone deficiency, ototoxicity, seizure disorder, visual deterioration, cerebrovascular events, second neoplasm, psychiatric illness, and neurocognitive impairment. Statistical analysis was performed for late toxicities to evaluate the influence of select factors. RESULTS: Our patient cohort included 112 patients with IGCTs; 84% of patients had a germinoma as opposed to a non-germinomatous germ cell tumor (NGGCT), median age at radiotherapy (RT) was 19 years, and median follow-up was 8.3 years. Of the 94 patients with germinoma, 32 (34%) received both chemotherapy and RT as part of their upfront treatment, while 62 (66%) received RT alone. All 18 patients with NGGCT received chemotherapy and RT. The most common late toxicity following IGCT treatments was physician-reported neurocognitive impairment, with a 10-year cumulative incidence (CI) of 38.5%. Ten-year CI of treatment-induced ototoxicity was 39.2% for patients who received cisplatin, compared to 3.6% for those who received carboplatin but no cisplatin (p < 0.005). Suprasellar/hypothalamic tumor location was associated with 10-year CI of treatment-induced hormone deficiency (36.1 vs 6.2%, p < 0.005). CONCLUSIONS: A significant proportion of AYAs treated for IGCTs experience late effects from treatment, including neurocognitive impairment, ototoxicity, and hormone deficiency. Suprasellar/hypothalamic tumor location and cisplatin were associated with a higher risk of treatment-induced hormone deficiency and ototoxicity, respectively.

Canadian patterns of practice for intracranial germ cell tumors in adolescents and young adults.

INTRODUCTION: The study objectives were to describe patterns of practice for intracranial germ cell tumors (IGCT) in adolescents and young adults (AYA) and to determine factors associated with practice patterns. METHODS: A survey was written containing questions on the management of two 17-year old males, one with localized pineal germinoma and the other with localized pineal non-germinomatous germ cell tumor (NGGCT). An invitation to participate anonymously in the survey was e-mailed to 119 oncologists who treat brain tumors across Canada. RESULTS: Seventy-two (61%) of the 119 oncologists participated in the study. For the germinoma case, the most common treatment approaches were whole ventricular radiotherapy (WVRT) and chemotherapy (CH) (56%), WVRT alone (15%), and craniospinal radiotherapy (CSRT) alone (10%); for physicians recommending WVRT + CH, most frequently selected whole ventricular doses were 24 Gy (57%) and 18 Gy (20%). Chemotherapy was included in the treatment of germinoma by 96% of pediatric physicians vs. 54% of adult physicians (P = 0.001). The most common treatment approaches for NGGCT were CSRT + CH (44%), WVRT + CH (21%), and pineal gland RT + CH (15%). The selection of craniospinal vs. smaller-volume RT was not associated with the physicians' specialty, percentage of practice treating brain tumors, number of IGCTs seen, or size of institution. CONCLUSIONS: There is wide variation in the management of IGCT in AYA across Canada. A 17-year old male with a localized pineal germinoma is highly likely to receive chemotherapy if managed by a pediatric oncologist, while the same patient is much less likely to receive chemotherapy if managed by an adult oncologist.

Documentation and incidence of late effects and screening recommendations for adolescent and young adult head and neck cancer survivors treated with radiotherapy.

PURPOSE: A retrospective review of adolescent and young adult (AYA) head and neck cancer (HNC) patients treated with radiation therapy (RT) at British Columbia Cancer  was performed to determine the incidence of late toxicities, the documented late side effects discussed and the screening recommendations provided at the time of transfer of care to primary care providers (PCPs). METHODS: Charts (n = 162) were reviewed for all patients 15 to 35 years at diagnosis with HNC treated with RT from 1960 to 2010 who survived > 5 years after diagnosis. RESULTS: A discussion regarding the risk of long-term side effects was documented in the initial consultation for 85% of patients. The majority of patients (78%) developed > 1 documented late effect. The most common were xerostomia (44%), skin changes (28%), neck fibrosis (22%), nasal crusting (16%), epistaxis (16%), and dental decay (14%). In all, 20% were currently followed or were followed until they died. Of the 80% transferred to their PCP, 14% had a formal discharge summary. For those discharged from British Columbia Cancer, documented recommendations included regular dental care (34%) and screening for hypothyroidism (5%) and second malignancy (4%). CONCLUSIONS: The majority of AYA HNC patients treated with RT developed late side effects, and most PCPs were not sent a discharge summary outlining screening recommendations for delayed late effects. IMPLICATIONS FOR CANCER SURVIVORS: AYA HNC survivors treated with RT are at high risk for late effects and would benefit from a survivorship care plan outlining these risks and screening recommendations.

Reirradiation in patients with diffuse intrinsic pontine gliomas: The Canadian experience.

OBJECTIVE: Clinical trials have failed to demonstrate a survival benefit of adjuvant chemotherapy in diffuse intrinsic pontine gliomas (DIPG). Radiation therapy (RT) is the only effective treatment thus far and reirradiation (rRT) has become an option at the time of progression. The aim of this study was to review the Canadian experience of DIPG rRT with a focus on the safety and possible efficacy of this approach. METHOD: We retrospectively reviewed the demographic, clinical, and RT data of patients with DIPG treated in Canada with rRT. RESULTS: Since January 2011, we identified 16 patients with progressive DIPG who received rRT. Median time from diagnosis to progression was 10.5 months (range, 4-37 months). rRT was given focally in 14 patients at a dose ranging from 21.6 to 36 Gy. rRT was well tolerated by all children but one. All but three patients showed neurological improvement. With a median follow-up from original diagnosis of 19.2 months, all patients died, with a median time from rRT to death of 6.48 months (range, 3.83-13.26 months). When compared to a historic cohort of 46 consecutive patients, the median time from progression to death was 92 days in the non-reirradiated patients versus 218 days in the reirradiated ones (P = 0.0001). CONCLUSION: In this limited experience, rRT was safe and feasible in patients with progressive DIPG, providing neurological improvement and a prolonged life span in most patients. Prospective Canadian rRT protocols are ongoing to further assess the benefit of this approach, including quality of life assessment.

Colorectal Polyps in Childhood Cancer Survivors Treated with Radiation Therapy.

BACKGROUND: Cancer survivors treated with abdominal or pelvic radiation therapy (RT) for childhood cancer have an increased risk of colorectal cancer. However, clinical guidelines are inconsistent on recommendations regarding the early initiation of screening in these patients due to the lack of supporting evidence that these patients pass through a pre-invasive phase, in which adenomatous polyps can be detected and removed. AIMS: To determine the prevalence of adenomatous polyps in cancer survivors treated with RT for childhood cancer; the prevalence in average-risk patients aged 17-49; and the prevalence in average-risk patients aged 50-75. METHODS: We conducted a retrospective study comparing the prevalence of adenomatous polyps among three patient groups: childhood cancer survivors aged 17-49 with prior RT who underwent colonoscopy screening from 2006 to 2017; age- and gender-matched patients in the average-risk population; and average-risk patients aged 50-75. RESULTS: One hundred and forty-five patients were included in the study. The proportion of patients with adenomatous polyps in the cancer survivor group was significantly higher than that in the age- and gender-matched average-risk group (58.6 vs 17.2%, p = 0.00) and higher than the average-risk group aged 50-75 (58.6 vs 27.6%, p = 0.009). The prevalence of adenomas with high-risk features was higher in the survivor group compared to patients aged 50-75 (20.7 vs 3.5%, p = 0.015). CONCLUSIONS: Cancer survivors treated with RT for childhood cancer have a higher prevalence of adenomatous polyps compared to the average-risk population. These findings support the early initiation of colonoscopy screening 10 years after radiation therapy, even in patients who have received RT doses below 30 Gy.

Multimodality imaging of a pulmonary artery sarcoma.

Pulmonary artery sarcoma is a rare malignant neoplasm. Here, we describe a patient with a pulmonary artery sarcoma, which was only subtly visible and therefore not fully appreciated on initial transthoracic echocardiogram. Characterization of the tumor was aided by the use of multimodality imaging that included computed tomography, magnetic resonance imaging, and positron emission tomography. Familiarity with its appearance on multiple imaging modalities including echocardiography is important to ensure timely diagnosis, although the optimal treatment strategy is still unknown, and the prognosis remains poor.

Long-term effects of cancer on earnings of childhood, adolescent and young adult cancer survivors - a population-based study from British Columbia, Canada.

BACKGROUND: The patterns and determinants of long-term income among young people surviving cancer, and differences compared to peers, have not yet been fully explored. The objectives of this paper are to describe long-term income among young survivors of cancer, the impact of socio-demographic, disease, and treatment factors on long-term income, and income relative to the general population. METHODS: Retrospective cohort study with comparison group from the general population, using linked population-based registries, clinical data, and tax-records. Multivariate random effects regression models were used to determine survivor income, compare long-term income between survivors and comparators, and assess income determinants. Subjects included all residents of British Columbia (BC), Canada, diagnosed with cancer before 25 years of age and surviving 5 years or more. Comparators were selected from the BC general population matched by gender and birth year. RESULTS: Young cancer survivors earned significantly less than the general population. In addition, survivors of central nervous system tumors have significantly lower incomes than lymphoma survivors. Survivors who received radiation therapy have significantly lower income. Results should be interpreted with caution as the comparator group was matched by gender and date of birth. CONCLUSIONS: Depending on original diagnosis, treatment, and other characteristics, survivors face significantly lower income than peers and may require supports to gain and retain paid employment. Lower income will affect their opportunity for independent living, and will reduce productivity in the labour force.

Comparison of hypersensitivity rates to intravenous and intramuscular PEG-asparaginase in children with acute lymphoblastic leukemia: A meta-analysis and systematic review.

BACKGROUND: Pegylated-asparaginase (PEG-ASP) is a critical treatment for pediatric acute lymphoblastic leukemia (ALL) and has traditionally been delivered via intramuscular (IM) injection. In an attempt to reduce pain and anxiety, PEG-ASP has increasingly been delivered via intravenous (IV) administration. The study objective was to perform a meta-analysis and systematic review to compare and generate pooled hypersensitivity rates for IM and IV PEG-ASP. METHODS: A systematic literature search was conducted for all epidemiological studies that investigated IV and IM hypersensitivity rates for pediatric ALL. Included studies were critically appraised using the GRACE checklist. Pooled estimates and odds ratios with 95% confidence intervals (CIs) for IM and IV hypersensitivity rates were derived based on either a random or fixed effects model. RESULTS: Four studies satisfied the inclusion criteria and were of adequate quality. The random effects pooled hypersensitivity rates were 23.5% (95% CI 14.7-33.7) and 8.7% (95% CI 5.4-12.8) for IV and IM, respectively. The fixed effects pooled odds ratio after adjusting for publication bias was 2.49 (95% CI 1.62-3.83), indicating a significantly higher risk of hypersensitivity for IV over IM PEG-ASP. This risk is far more pronounced for high-risk (HR) patients compared with standard-risk (SR) patients (IV vs. IM: HR ↑35.2% and SR ↓2.9%). CONCLUSIONS: Although administering PEG-ASP through IV is preferable for patients, it poses a significantly higher risk of hypersensitivity when compared with IM administration, especially for HR patients. We recommend pediatric oncologists consider treating patients with HR pediatric ALL with IM PEG-ASP to reduce the risk of hypersensitivity.

Late mortality, secondary malignancy and hospitalisation in teenage and young adult survivors of Hodgkin lymphoma: report of the Childhood/Adolescent/Young Adult Cancer Survivors Research Program and the BC Cancer Agency Centre for Lymphoid Cancer.

Late complications affecting Hodgkin lymphoma (HL) survivors are well described in paediatric and adult-based publications. This study determined the late morbidity and mortality risk for 442 teenage and young adult (TYAs) 5-year HL survivors, diagnosed at 15-24 years of age between 1970 and 1999, identified from the British Columbia Cancer Registry. Treatment details were abstracted from charts. Survivors and a matched comparison cohort were linked to provincial administrative health datasets until December 2006 and regression analysis was performed, providing risk ratios regarding mortality, secondary malignancy and morbidity causing hospitalisation. Sixty (13·6%) survivors experienced late mortality with excess deaths from secondary cancer [standardised mortality ratio (SMR) 18·6; 95% confidence interval (CI) 11-29·4] and non-malignant disease (SMR 3·6; 95% CI 2·2-5·5). Excess secondary cancers (standardised incidence ratio 7·8; 95% CI 5·6-10·5) were associated with radiotherapy [Hazard ratio (HR) 2·7; 95% CI 1-7·7] and female gender (HR 1·8; 95% CI 1-3·4). Of 281 survivors treated between 1981 and 1999, 143 (51%) had morbidity resulting in hospitalisation (relative risk 1·45; 95% CI 1·22-1·73). Hospitalisation significantly increased with combined modality therapy, chemotherapy alone and recent treatment era. TYA HL survivors have excess risk of mortality and secondary malignancy continuing 30 years from diagnosis. Radiotherapy is associated with secondary malignancy and current response-adapted protocols attempt to minimise exposure, but late morbidity causing hospitalisation remains significant.

A Cross-Sectional Cohort Study of Cerebrovascular Disease and Late Effects After Radiation Therapy for Craniopharyngioma.

BACKGROUND: The study objective was to describe radiation-induced vascular abnormalities, stroke prevalence, and stroke risk factors in survivors of childhood craniopharyngioma. PROCEDURE: Twenty survivors of childhood craniopharyngioma who received radiotherapy (RT) were included in the study. A clinical history, quality of life assessment, cognitive functioning assessment, magnetic resonance angiogram or computed tomography angiogram, fasting lipid profile, and fasting glucose or hemoglobin A1c test were obtained. RESULTS: Median age at diagnosis was 10.3 years and median age at time of study was 29.0 years. Vascular abnormalities were detected in six (32%) of 19 patients' angiograms (vascular stenosis, decreased artery size, aneurysm, cavernoma, and small vessel disease). Five (25%) of 20 patients experienced a stroke after RT. Median time since RT was 27.8 versus 9.1 years in patients with versus without vascular abnormalities (P = 0.02). A low level of high-density lipoproteiin (HDL) was present in 100% (5/5) of patients who had a post-RT stroke as compared with 13% (2/15) of patients who did not have any post-RT stroke (P = 0.02). Previous stroke had occurred in 0% (0/5) of patients receiving growth hormone (GH) replacement at the time of study, compared to 40% (6/15) of patients who were not receiving GH replacement (P = 0.09). CONCLUSIONS: Patients with craniopharyngioma treated with RT have a high prevalence of stroke and vascular abnormalities, particularly those with low HDL and longer duration of time since RT. There is a trend to suggest that continual GH replacement may reduce the risk of stroke. These patients should undergo careful monitoring and aggressive modification of stroke risk factors.

The role of resection alone in select children with intracranial ependymoma: the Canadian Pediatric Brain Tumour Consortium experience.

PURPOSE: Gross total resection (GTR) of intracranial ependymoma is an accepted goal. More controversial is radiotherapy deferral. This study reports on children treated with gross total resection who did not receive upfront adjuvant radiotherapy. METHODS: We conducted a retrospective review of children with intracranial ependymoma in 12 Canadian centers. Patients who had GTR of their tumor and no upfront radiotherapy were identified. Immunostaining was performed for Ki-67, epidermal growth factor receptor (EGFR), and EZH2 on archived tissue. The Kaplan-Meier survival analysis was performed and compared with those who had GTR followed by radiation. RESULTS: Twenty-six children were identified treated with GTR alone at diagnosis; 12 posterior fossa ependymoma (PFE) WHO grade II, and 14 supratentorial ependymoma (STE). Progression-free survival (PFS) in ependymoma treated with GTR alone at diagnosis was inferior in those with high Ki-67 or positive EZH2 immunostaining. Survival was inferior for patients less than 2 years old at diagnosis (p = 0.002). Survival was comparable to PFE WHO grade II and STE who had GTR followed by radiation (p = 0.62). Five-year PFS and overall survival (OS) of those treated with GTR alone were 60 and 70% respectively for PFE and 45 and 70% respectively for STE (p = 0.2; 0.55). CONCLUSIONS: This study suggests that there is a subset of children with certain biologic features who, in the setting of a prospective clinical trial, might be candidates for observation following GTR. Good risk factors for this approach include age of 2 years or older, low Ki-67, and negative EZH2. If relapse occurs, it may be confined to the primary site, allowing for possible salvage with GTR followed by XRT.

Late morbidity leading to hospitalization among 5-year survivors of young adult cancer: a report of the childhood, adolescent and young adult cancer survivors research program.

To estimate the risk of late morbidity leading to hospitalization among young adult cancer 5-year survivors compared to the general population and to examine the long-term effects of demographic and disease-related factors on late morbidity, a retrospective cohort of 902 five-year survivors of young adult cancer diagnosed between 1981 and 1999 was identified from British Columbia (BC) Cancer Registry. A matched comparison group (N = 9020) was randomly selected from the provincial health insurance plan. All hospitalizations until the end of 2006 were determined from the BC health insurance plan hospitalization records. The Poisson regression model was used to estimate the rate ratios for late morbidity leading to hospitalization except pregnancy after adjusting for sociodemographic and clinical risk factors. Overall, 455 (50.4%) survivors and 3,419 (37.9%) individuals in the comparison group had at least one type of late morbidity leading to hospitalization. The adjusted risk of this morbidity for survivors was 1.4 times higher than for the comparison group (95% CI = 1.22-1.54). The highest risks were found for hospitalization due to blood disease (RR = 4.2; 95% CI = 1.98-8.78) and neoplasm (RR = 4.3; 95% CI = 3.41-5.33). Survivors with three treatment modalities had three-fold higher risk of having any type of late morbidity (RR = 3.22; 95% CI = 2.09-4.94) than the comparators. These findings emphasize that young adult cancer survivors still have high risks of a wide range of late morbidities.

Growing teratoma syndrome in intracranial non-germinomatous germ cell tumors (iNGGCTs): a risk for secondary malignant transformation­a report of two cases.

PURPOSE: About 5% of pediatric intracranial germ cell tumors and 20% of non-germinomatous germ cell tumors (NGGCT) progress to growing teratoma syndrome (GTS) following chemoradiotherapy. The growing teratoma is thought to arise from the chemotherapy-resistant, teratomatous portion of a germ cell tumor and is commonly benign but may undergo malignant transformation. METHODS: Two pediatric patients whose intracranial NGGCTs progressed to growing teratomas during chemotherapy and later transformed to secondary malignant tumors after partial resection and radiation therapy (RT). RESULTS: Both tumors were diagnosed by MRI scans and elevated serum and CSF markers. Following normalization of tumor markers with chemotherapy and initial decrease in tumor volume, subsequent imaging showed regrowth during chemotherapy with pathology revealing benign teratoma. RT was administered. Several years following this treatment, further growth was seen with pathology indicating malignant carcinoma in one patient and malignant rhabdomyosarcoma in the other. The patient with carcinoma received palliative care while the patient with the sarcoma received further resection, intensive chemotherapy, and an autologous stem cell transplant and is currently in remission, 36 months since malignant transformation. CONCLUSION: Malignant transformation of presumed residual teratoma has been seldom reported. Treatment of NGGCT involves platinum-based chemotherapy with craniospinal RT and boost to the primary site, with cure rates of around 80%. Teratomas are characteristically chemotherapy and RT resistant and are treated surgically. In the event that residual or growing teratoma is suspected, a complete resection should be considered early in the management as there is a risk of malignant transformation of residual teratoma.

Patient-Reported Outcomes in Adolescent and Young Adult Head and Neck Cancer Survivors Treated with Radiotherapy.

Purpose: There are few studies of adolescent and young adult (AYA) head and neck (H&N) cancer survivors treated with radiotherapy. A recall of AYA H&N survivors was performed and this article evaluates their cross-sectional patient-reported outcomes. Methods: AYA H&N cancer survivors who had received radiotherapy in British Columbia between 1970 and 2010 participated in this study. Participants completed the Psychosocial Screen for Cancer-Revised (PSSCAN-R), Research and Development (RAND)-36 health-related quality of life, and the Vanderbilt Head and Neck Symptom Survey, version 2.0 (VHNSS 2.0), to evaluate late effects from treatment. Results: There were 36 participants in the study. Severe symptoms (greater than or equal to 4/10) were reported on the VHNSS 2.0 by 51% of participants for xerostomia, 35% for dysphagia, and 37% for dental/mucosal sensitivity. On the PSSCAN-R, 35% had moderate/high anxiety scores and 48% had moderate/high depression scores. The mean RAND-36 participant scores were as follows: physical functioning, 86.1; physical role functioning, 71.4; emotional role functioning, 75.1; energy/fatigue, 56.6; emotional well-being, 74.6; social functioning, 76.3; bodily pain, 71.7; and general health, 65.6. Conclusions: AYA survivors in our study reported significant late effects from H&N radiotherapy and high depression and anxiety scores, but generally high health-related quality of life. Prospective evaluation of psychosocial needs and H&N-related complications is warranted in this subgroup at high risk of late effects from treatment.

A cross-sectional assessment of long-term effects in adolescent and young adult head and neck cancer survivors treated with radiotherapy.

PURPOSE: Adolescent and young adult (AYA) head and neck (H&N) cancer survivors are at risk of long-term complications. A cross-sectional study of survivors recalled for clinical evaluation was performed to evaluate late effects in this population. METHODS: Surviving patients who had been diagnosed with H&N cancer between the ages of 15 and 39 years and treated with radiation therapy (RT) in British Columbia between 1970 and 2010 were invited to participate in this study. Survivors were assessed in consultation by a radiation oncologist for a complete history and physical exam. Comprehensive data collection of subjective and objective late effects of RT and screening investigations were completed. RESULTS: Of 36 AYA H&N participants, the majority were female (61%), and the most common tumour sites were thyroid (28%), oropharynx (17%), salivary gland (14%) and larynx (14%). Dental extractions post treatment was performed for 33% and dental implants for 17%. The majority (72%) reported xerostomia, 50% had dysphagia to solids and 25% hearing loss. Of the non-thyroid cancer patients who underwent RT to their neck, 45% developed hypothyroidism. There were 28% of participants with asymptomatic carotid stenosis and 27% with thyroid nodules; all were diagnosed after recall screening. CONCLUSIONS: Survivors of AYA H&N cancer treated with RT reported numerous long-term complications. Comprehensive follow-up and screening guidelines should be established for this at-risk population. IMPLICATIONS FOR CANCER SURVIVORS: AYA H&N cancer survivors and their primary care practitioners should be educated on screening recommendations and the risk of late effects.